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Author Topic: Very early stage Peyronie's, 27yo  (Read 2821 times)

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Very early stage Peyronie's, 27yo
« on: March 06, 2014, 08:14:06 PM »

Age 27

Age at onset of Peyronies Disease  -  26

Very First Symptoms -Painful Erections in March 2013

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes

It has been almost exactly one year now since the pain started on 18th March. I marked that date.
The first signs was dull pain which was present mainly in the flaccid state.
After about two weeks it was quite unbearable and I went to the first Uro.
I say the first because the following months was an odyssey many here can relate to.
Hence I will not even attempt to list all the Uros I've seen, I really couldn't remember them all.
Suffice it to say no one found anything. I was pointlessly treated with antibiotics (Cipro) which probably made everything worse among other things. I spent 10 days in a reputable urological clinic faced with clueless medical idiots who wanted to tell me I have psychological issues because "clearly" my penis is fine. I had 3 MRI's etc..
Cutting a long story short. The pain first stopped in April then changed over months into a general discomfort, hard flaccid (beginning June), needle like and then unbearable, debilitating burning pain emanating from the base.
It's October now and I drive 300 km to my appointment I made 3 months ago with another Peyronies Disease specialist.
This turned out to be someone with a clue. Finally!
I immediately noticed how careful and assiduous  he examined me. He found some very mild scarring, could be the beginning of Peyronies Disease. Prescribed me Cialis for a month.
One month later at my second visit I came with a new unfortunate "finding", a small nodule on the underside, distal midshaft.
He prescribed Potaba which I've been taking since November.
At my last visit he said no change since last time. He needs some "imagination" to see the lesion on the ultrasound, but is "still pretty sure this is Peyronies". In writing he is appearantly more careful than in talking and covers all the bases.
I cite from his written report about my last follow-up in January:
- Unclear penile discomfort since 03 / 2013
- Penile pain at rest, paresthesia, tingling
- Painful nocturnal erections without priapism
- Largely insignificant organic diagnostic findings, also according to MRI
- Potentially very early, unstable Peyronie lesion in the area distally of the mid section of penile shaft
- The patient complains about a stable decrease in penile length.

- Current follow-up revealed a stable diagnosis. There is still clinically as well as sonographically no certain diagnosis
of Peyronies Disease. There is neither a total increase of consistency nor a plaque detectable.
- Continuation of therapy with Potaba.

I have to remark here that they have a strange definition of "plaque". Anything not bigger than 5 mm does not count.
So I actually do have a plaque, the "lesion" is the plaque, just 4 mm instead of 5...


Where I am today, future plans -

I have taken medication for 5 months now and I am physically as well as mentally exhausted.
Have a hard time concentrating on my Job because the pain is still severe and I have anxiety attacks, maybe from the Potaba, idk.
My liver values have been climbing from the Potaba, just slightly above norm, nothing to worry about according to my GP, but still I feel very very weak.
I have discontinued the Potaba. I believe it was a big help and kept my condition stable which seemed to have been progressing before. But I'm just too weak right now.
My plan is to regain strength and then try the popular Pentox and hope it helps with my pain and have no side effects.
I'm especially worried about side effects on my brain since my job requires deep concentration and a well-functioning brain.
Given that last fact I'm already close to just let the disease take it's course and say the dick farewell so I at least have a career left.
"Without health life is not life; it is only a state of languor and suffering - an image of death."


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Re: Very early stage Peyronie's, 27yo
« Reply #1 on: March 07, 2014, 11:58:37 AM »

This is Sad.  But, don't give up.  You are too young to give in to the situation.  Keep reading about this Disease on the Internet and keep trying new things on your own instead of just what the Doctor's say to do.  Keep trying and Good Luck. 

I have had Erectile Dysfunction for 30 years, and discovered last year that I have Peyronies.  Everything I have tried, like Pentox, etc., have had Bad Side Effects for me, but I can't give up.  So, you shouldn't give up.  You have a lot of available time in front of you. 

Take Care.


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Re: Very early stage Peyronie's, 27yo
« Reply #2 on: March 10, 2014, 03:12:46 AM »

Hello. I also started experiencing symptoms when I was young (25). I was misdiagnosed for a year until the pain started to subside a bit and a curve developed. THEN the doctor diagnosed it. I ended up ordering pentox online. As far as pain reduction goes, nothing seems to work like pentox. It also helps with the hard flaccid and it appears the curve has settled down. I still have a small curve but lucky for me my plaque is at the very end of my penis, right near the head (for those circumcised). Because of this my curve starts at the tip so it doesn't really interfere with sex too much, especially after pentox. I know that I can't provide any scientific proof for the effectiveness of pentox but my penis feels more elastic using it and there is no pain. I am hoping to start either VED or traction soon, though the cost has kept me from initiating it. I finally have non-kaiser insurance and will be seeing a better peyronies specialist. It is frustrating at times but I think the goal should be to get your pain down at this point. Although I lost length form peyronies just being able to have a functioning member keeps me happy. Don't give up, I sure as hell am not.
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